Everyday Hero: Parents continue their daughter's 'JoyJars' legacy

Sept. 9, 2013

Updated Sept. 11, 2013 4:28 p.m.

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Erik and Stacey Rees hold a photo of their daughter Jessie, who died of cancer in 2012. The Jessie Rees Foundation was started to fulfill their daughter's wish to encourage every child fighting cancer to never give up. PAUL RODRIGUEZ, ORANGE COUNTY REGISTER

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Before she died of cancer in 2012, Jessie Rees' wish was to encourage every child fighting cancer to never give up. To that end, she created "JoyJars" filled with toys and other fun items to give away to other kids fighting cancer. PAUL RODRIGUEZ, ORANGE COUNTY REGISTER

Erik and Stacey Rees hold a photo of their daughter Jessie, who died of cancer in 2012. The Jessie Rees Foundation was started to fulfill their daughter's wish to encourage every child fighting cancer to never give up. PAUL RODRIGUEZ, ORANGE COUNTY REGISTER

"Erik and Stacey have not only opened their hearts to the world, they've opened their lives. They give to heal and not receive. Their daughter Jessie is a beautiful reflection of what wonderfully, blessed parenting they provided for their family, and is something we can all learn from. I truly feel our family has been blessed having them in our lives. Jessie is a hero in our home to our son, Ayden, who fights anti-plastic medulloblastoma and who hopes to be just as giving as she was.” - Misty Elsasser, NEGU supporter

"My parents are the most caring people I know. They love and care about anyone they meet. They are also very humble, and they would do anything for their kids. I would say that my dad is very driven and determined. He always has new ideas for the foundation. My mom is very enthusiastic and a great listener. She is always there if you need help.” - Shaya Rees, 16

It was a tough day at the Joy Factory.

Erik Rees sat staring out the window of his mostly empty office. “Well, you know. Some days are tougher than others,” said Erik, his otherwise piercing green eyes softened by the tears rimming them.

Where was the tissue box? No one knew. They'd just moved into the new, sprawling 6,500-foot headquarters of the Jessie Rees Foundation, that came as a gift to them, tucked in an Irvine industrial park, and were still getting settled in.

“We usually have them all over the place,” said Erik's wife, Stacey, as he went in search of the tissues. “We cry all the time around here.”

Since its formation less than two years ago, the nonprofit foundation has remarkably raised $2 million and sent more than 70,000 “JoyJars” filled with toys, games and stickers to brighten the days of children struggling with cancer around the world. Volunteers hand-pack each jar on long tables surrounded by plastic bins stuffed with goodies – the “Joy Factory.”

The volunteers follow the very specific requirements established by “JoyJar” creator, 12-year-old Jessie Rees. Per Jessie: No warning labels showing. No thrown-together stuff. Most of all, “no cheese” – as in, nothing cheesy.

She started making the jars in the kitchen of the Rees home after seeing sick kids in the oncology ward at Children's Hospital. She asked her parents what they could do to help put smiles on the kids' faces, but it was Jessie herself who came up with the solution. She even created a catch phrase, “NEGU,” short for “never, ever give up.”

In the face of a disease that has no mercy, spreading joy is a heroic feat. The foundation website cites grim statistics: Every day 50 new children are told they have cancer. Every four hours a child dies from cancer. Half a million children in the world have cancer.

“In some Third World countries, children don't even get medicine, but to see smiles on these children's faces when they are handed a JoyJar … you know you are doing something,” said Erik.

The idea was a super-sweet thing for any kid to do, sure. But it was all the more remarkable because Jessie herself was one of those sick kids, diagnosed with two inoperable brain tumors.

On the way home from her many chemotherapy and other medical treatments, the family made a habit of stopping at the 99 Cent Store and Target to shop for treats to fill the JoyJars.

“We thought it was a positive distraction. It put a smile on her face, and that is all I ever wanted to do, was just make her smile.” Erik's voice cracked as he said this.

“It's just something that she did, and it helped her take her eyes off herself. Sometimes when you focus on your own problems they become so huge,” said Stacey.

And they were huge. Less than a year after being diagnosed with cancer, Jessie died on Jan. 5, 2012.

This particular day – Thursday Sept. 5 – marked exactly 20 months since, as her parents both say, “she went to heaven.” It was a day, admitted Stacey, that started “with tears.” Every month marker has been hard, but that day, “being the fifth, and a Thursday, it's a double whammy.”

“In some ways you think it has only been 20 months, but then my heart can't get around that it could be 20, 40 more years …” Erik's voice trailed off.

Although Erik, a former pastor, and Stacey take comfort in their faith that Jessie is now in the arms of God and that one day they will see her again, nonetheless grief with a capital “G” has not spared them. Although grief has not broken their faith, it has strained it, with Stacey not understanding why the god she's strived her entire life to obey did not answer her prayers the way she wanted.

It has caused Erik to grapple with “seasons of anger,” it has required them to offer each other “a lot of grace,” Erik explained, as they each “process pain” in their own ways.

“We live with a limp nobody else sees,” Erik said. “And it is not going to go away. You have to figure out ways to get through it. Grief is not something you get around. You just have to go through it.”

Hope and faith, say Erik and Stacey, is the trail they're following. Like a map, they have written it on their bodies.

A tattoo saying “Never Ever Give Up” encircles Stacey's ankle; Erik has the same thing written in a cursive flourish on his calf. “Jessie's phrase is not something that's just for a child. I live by it every day. It's what gets me out of bed some days when I don't want to,” Erik said.

And if that doesn't work, faith does. “Not having answers, you have to have faith. Heaven has never become more real to me. The meaning of Easter used to just be words, but now, because of that I will see my daughter again, so it has become super real.” Erik smiled as he said this. “I could not imagine going through this without it.”

Stacey nodded. “There is no way we would get up.” She has another tattoo coloring the inside skin of her right forearm, this one a floral design with a blue heart. Inside the heart is written JESS.

Stacey had the word put there in honor of Jessie, but then a friend pointed out an interesting coincidence – it also represents the first initials of the four remaining Rees family members: their 11-year-old son J.T.; Erick; Stacey; and their 16-year-old daughter, Shaya.

It seems a portent, a sign foretelling the way forward – that together they can accomplish what cannot be done alone.

After Jessie's death, the family convened for a meeting to find out if the children wanted to continue Jessie's JoyJars. Stacey worried they might feel invisible, their needs eclipsed by their sister's illness and passing, and with the family's entire free time – Erik works for Orange County YMCA and Stacey with the Nadadores swim team of Mission Viejo – spent volunteering to keep up with the demands of the foundation.

But the kids voted to continue, with Shaya – who is now a foundation junior board member – reminding them that giving up was never an option.

The possibilities for NEGU now seem limitless – new programs are being added, and other foundations, from heart disease to autism, are looking to partner with the foundation as a way to spread hope beyond the concern of pediatric cancer.

“The foundation has helped us, because it is a little cathartic in that it keeps you busy. Sometimes sitting too long and quiet … isn't necessarily a good thing. That's when it hurts,” said Stacey. Having other kids who take interest in building the foundation has been a particular balm.

“We want young people to speak into what we do, to say what's cool and what's not cool. We want them to have ownership, and they see how a difference can be made. It is comforting to Erik and I, knowing Jessie continues to impact her peers. That is a blessing to us.”

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